HIV: Igniting Conversations that Bring About Change

As of September 1, South Africa is implementing “test and treat” — where every HIV positive person is placed on an anti-retroviral treatment (ART) program, regardless of their CD4 count, an indicator of how well the immune system is working. The policy follows the announcement of new guidelines for HIV management by the World Health Organization (WHO) in December 2015.

Journalists need to tell this story, because in theory, “test and treat” makes HIV all but invisible.

South Africa is the country with the largest number of HIV positive people in the world and the country with the largest antiretroviral program. One would presume that alongside politics, the latest HIV science would be part of the national conversation. That South Africans know a lot about HIV. But petty party political battles revealed that some of the fundamentals of HIV and the gains of treatment are not yet internalized in the national psyche.

HIV testing is the first crucial step. Credit: André Smith

HIV is still indelibly linked to being thin.

In July, ahead of the country’s municipal elections, the image of a visibly slimmer Julius Malema, the provocative and rough-charm leader of South Africa’s Economic Freedom Fighters (EFF), was splashed onto front pages and TV screens. Gone was Malema’s belly and puffy face. There were two types of response to his weight loss: praise and mischief-making.

Just before the elections, Malema’s political opponents, issued a statement: “The [ANC] Youth League is concerned that the unexplainable weight loss of Julius has affected his mental ability and we therefore appeal to our minister of health […] to intervene in the matter of this fellow’s health and wellbeing so as to rescue him from self-destruction.”

Most South Africans would read this as an attempt to imply that he had HIV. In South Africa, HIV used to be called the “slim disease.” As South Africa’s Mail and Guardian reported, perceptions in some cultures that slim equals sick perpetuate the stigma around HIV. The newspaper quotes a 2011 University of the Western Cape study, which found that black South African women are not motivated to exercise because they fear that by losing weight they will be stigmatised as being infected with HIV.

It turns out Malema had cut out sugar and alcohol. He shared his healthy lifestyle choice online. Malema’s opponents could get away with mischief-making, because the association between HIV and sudden weight loss is still such a strong mental imprint. Journalists have to ask why; why is this prevailing image so pernicious?

Science vs. traditional belief systems

David Dickson, a professor of sociology at Wits University in South Africa, in 2015, raised an interesting question related to HIV in his country — “why, after almost 30 years of public health messages, do alternative, non-scientific explanations of AIDS continue to circulate?”[1] His commentary, “Why scientific AIDS explanations struggle in townships” highlights the puzzle associated with the “frustrating stubbornness” of the disease, which, in spite of the large number of people accessing treatment, still shows up as the third largest killer of people in the country.

Dickson links the (false) AIDS beliefs of people living in townships to “continuing spatial legacy of apartheid” and he shows how these beliefs become plausible within particular contexts. “If, for example,” he writes, “people experience racism in their daily life, racial conspiracy theories about AIDS have a head-start. Their power also lies in their palatability: people would rather hear that they should, for example, avoid injections from white doctors than follow instructions to condomise.”

Dickson’s article brought to mind Lisa Cobb’s[2] cross-posts on HC3 and the Ebola Communication Network. In one of her blogs, Anthropology and Ebola Communication, Cobbs points out the need to conceptualize behavior through an anthropological lens — to ask why people do what they do. For journalists this ‘why’ question is the heart of every story.

“Test and treat” means anyone who is HIV positive starts taking anti-retroviral drugs, even if they are healthy. Credit: André Smith

When “test and treat” guidelines were first proposed by the WHO, some clinicians expressed caution, because some of the existing treatment programs did badly at retaining patients in care after diagnosis. What guarantee would there be, they asked, that patients who are not sick would take their medication diligently? The response to Julius Malema’s weight loss has shown there is still a strong association between slimness and HIV. The science is clear, but AIDS disease tropes are stubborn. “Test and treat” can turn the epidemic around, but only if HIV testing becomes the norm and people strictly follow the treatment program, and only if people embrace the science and not the misconceptions.

Media stories can ignite a new conversation

This is why Internews supports journalists in their local contexts to report the science and dispel rumor and myth. We worked for years with journalists in Kenya, to tackle complex science and to tell tough stories about how HIV forces a change in behavior. When science showed that circumcised men were only about half as likely as uncircumcised men to contract HIV from infected women, journalists told that story in a region where circumcision was not the done thing. Because these stories made the science understandable and engaged the audience, the media in Kenya has been credited with driving demand for medical male circumcision (VMMC). We’ve also worked intensively with journalists reporting the HIV epidemic in India, Ethiopia and Nigeria, and partnered with HC3 to work with journalists in Liberia in the Ebola response. They know the science and are grounded in their own communities. Their stories stimulate conversations that arrest stigma and distrust.

At the World Aids conference in Durban, South Africa, academy award winnerCharlize Theron told delegates: “HIV isn’t just transmitted by sex — it’s transmitted by sexism, and racism, poverty, and homophobia. If we are going to end AIDS, we must cure the disease in our hearts and minds first.”

“Test and treat” can change the epidemic around. But there must be demand for the service — people must actually go for HIV testing and must take their medication diligently for the service to be as effective in real life as in study findings. Only then will HIV no longer be linked to slender or emaciated bodies, or other stigmatized beliefs. Journalists who know the science can tell the factual story about how HIV — and Ebola and Zika — can be prevented. But facts alone seldom shift behavior. There must be a conversation in which the facts of science resonate with real experiences.